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PBS Living With Alzheimer's
Posted: Friday, February 12, 2021 11:25 AM
Joined: 9/12/2013
Posts: 3608

I watched this 1 hour program last night and recommend it, probably on youTube.

Most of the symptoms of my ALZ would not be obvious (at this point) to most people.

I did not know loss of peripheral vision was an early sign even though that was what finally got me a diagnosis. A few people in the documentary spoke about how others would not know they had dementia and would say "Oh I forget my keys all the time" etc and the basic part of the 1 hour program was about how environment makes or breaks the ease of the experience for both patient and caregiver.

One thing I did notice was that the focus of finding a medicine  is still centered on the plaques and tangles and tau as the problem.  They said "cognitive loss is from cells' inability to communicate and lose track of memories". I still think the plaques and tangles could be body's attempt to protect or heal or create pathways for thoughts.

While the global pharmaceutical companies continue down the same path I have relied on finding what works and does least damage.

 I measure improvements by function. 4 years ago I was walking bent forward and could barely walk 60 steps to corner. Driven by boredom I forced myself to walk daily with my dog on an up and down road that was 1 mile. Some days we went twice. This was down from walking several miles a day with neighbors and dogs in years before.

When I was moved out west I began doing  simple beginner yoga for strength at home.  I added walking, starting at 5 minutes very slow. A year later I am walking 2 miles a day and doing 30 minutes of yoga every morning. I remember helping my dad go for walks and how even  1/4 mile made him cheerful. Simple things might help more than we imagine.  Question your beliefs about the illness. Use an exercycle, rowing machine or treadmill, swim or just get outside and move. Over time note what changes - if any - happen and share them here. 

I've lost 2 pant sizes and sleep good. I take cbd oil in morning and thc drops at night. I sometimes sleep 8 hours straight. I have a small container garden of neighbors' rescued broken plants that is thriving. I keep conversations short and smile. I was able to learn to bake from scratch last year and how to get groceries delivered with online shopping list. I watch a lot of TV and listen to audiobooks. I had to learn to have phone visits and keep pandemic protocols. My diet is easy and pretty healthy. I am content.

* the reason I came to write here today was because in PBS show a caregiver wife told how one day her husband went into a rage and injured her over hours. I remembered getting stuck in angry mode like I stepped in emotional quicksand and it would go on and on, once while traveling and it would not stop. My daughter gave me some Purple Kush to smoke and the rage ended in minutes, my heart opened, I was able to apologize to everyone and had a long cry with profound relief. Alternative medicine sometimes is wonderful. It is harmless and works fast. If you have rages or are stuck, cannabis smoked (heat changes THC effects) might be a big help. 

love and courage

ps: typing today was easier than it has been in ages. Go figure! I still can't sort my legal papers or clean a closet but this is good!


Michael Ellenbogen
Posted: Friday, February 12, 2021 12:13 PM
Joined: 11/30/2011
Posts: 4324

Good to hear from you.
Iris L.
Posted: Friday, February 12, 2021 3:29 PM
Joined: 12/15/2011
Posts: 18061

Thanks for posting.  Your demetia journey could be a guidebook for patients.  I appreciate your experiences with the walking and the yoga.  

 Doctors and caregiver members continue to tell newcomers that there is nothing to be done to help PWDs.  I answered a thread yesterday about Best Practices; the original poster was interested. 

There was mention of a PBS progeam a few weeks ago.  I believe I did watch it.  But I really don't remember.  Isn't that something!

Keep going, Alz+, you are an inspiration and encouragement to me and to others!  


Posted: Wednesday, February 24, 2021 4:14 PM
Joined: 9/12/2013
Posts: 3608

I see I still have a pattern where i write about something and then remember at the end what I meant to say. I forgot what I came to write about again - 

so the thing that has replaced my rock hunting hours in Michigan is a container garden made from other resident gardeners' broken, unwanted or dying plants. I have tried to make a "fence" on the sunny 12' section by my trailer so I could have my dog spend outdoor time here (she lives with my partner at his house close by).  Not happening. So I tried just putting plants along the street.

The plants thrived, pots multiplied, after a year of not being able to figure out how to give myself this outdoor space some privacy - it was beyond me I have adjusted to no privacy but a fun row of plants. 

This past week almost everyone who has walked by when I am sitting out there has said how much they like my garden.  It is nothing like the artful front gardens many other residents have.  Also occurred to me that although I think I am fooling everyone about cognitive loss, I have reason to believe everyone knows. 

I have been greeting a dog as "Friendly" for a year. Pretty sure that was his name. Yesterday someone said "his name is 'Happy'". Ha!

Does it matter? I have not been able to upload a photo in years. Today I think I did it to show my garden. !!!! It is humble, the pots, dirt, plants are all discarded/reclaimed. 

Oh, the plants absorb my attention like rock hunting did/does. It is almost a trance. It is enjoyable.

The yoga videos absorb my attention. When I become absorbed mentally in something it seems to clear my head when it is over. Walking is similar effect, looking at flower bed gardens, petting cats in street, doing laundry. 

well, lost train of thought. This over 55 trailer park is easy for me to live in. People who took to the road in RVs and loved it - that might be close to this situation.

Big Snow Moon this Friday

love and courage

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Posted: Wednesday, February 24, 2021 5:16 PM
Joined: 2/16/2017
Posts: 1709

Dear Alz

Your garden is beautiful and it looks like you have a very comfortable place to relax. Hugs Zetta  

Iris L.
Posted: Wednesday, February 24, 2021 11:35 PM
Joined: 12/15/2011
Posts: 18061

Has it been a year since you moved?  Yes, your garden does look nice.  It's great that you can find things that absorb your attention.  You liked rock-hunting, now you are being a carer for plants.  How satisfying!  


Posted: Thursday, February 25, 2021 12:49 PM
Joined: 9/12/2013
Posts: 3608

thank you Iris for years of encouragement.

Yesterday it was a beautiful 70 degrees. A neighbor walked past and told me to be mindful of the new black planters as they heat up in sun. I touched the side and they were HOT! One day in sun and the roots of those plants were cooked! Those planters were my splurge now I have to figure out what to do with them. She said I could paint them or move them to shade. Darn it.

Llee sent me a purple blanket when I was struggling a couple years ago. I use it every day and think of the friends I will never meet in person but who lifted me up from despair.

I appreciate all the friends I had here in past, deeply grateful.

wishing you a fire free summer! 

love and courage